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Privacy fears as DNA testing firm deCODE Genetics goes bustMark Henderson, Science Editor
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(The Wellcome Trust/Reuters)
DeCODE Genetics has identifed dozens of genetic variations that affect common diseases
A leading genetics company that has pioneered personal DNA testing in health assessments went bust yesterday, raising privacy concerns about the sensitive data it holds.
DNA profiles belonging to thousands of people who have paid up to £600 for internet genetic tests are to be transferred to a new organisation, after deCODE Genetics filed for chapter 11 bankruptcy in a US court.
The fate of the Icelandic company, which has never turned a profit despite making a string of discoveries about the genetic origins of common diseases, has fuelled fresh debate about access to DNA data.
The genetic records of its customers will now be held by Saga Investments, a venture capital group that has agreed to buy deCODE’s core science operations, including its deCODEme personalised genetic testing service.
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Kari Stefansson, deCODE’s chief executive, told The Times that ownership of genetic data remained with the company’s customers and that Saga would be bound by a privacy policy that prevents disclosure of data to third parties such as insurers, employers or doctors.
Industry experts said that Saga would want to maximise returns on its investment, and could still make wider use of data that some subscribers may find uncomfortable. Pooled and anonymised information, for example, could be sold to academic researchers or pharmaceutical companies.
Dan Vorhaus, a lawyer with the US firm Robinson, Bradshaw and Hinson, which specialises in genomics, said that while the new management would be bound by deCODE’s customer agreements, these were often unclear and contradictory.
“The ownership is going to change, and the people making decisions about how to run the company are going to change,” he said. “This information was held by deCODE, a scientific research organisation. What you have now is Saga, an investment company with a different agenda, very much focused on the bottom line.
“Within the range of allowable uses, deCODE’s new ownership may choose to use that information in a different way, and possibly to a greater extent, than was previously the case.”
Helen Wallace, of GeneWatch UK, a group that campaigns about the risks of genetic technologies, said the case showed that people who bought commercial DNA tests could not be confident that their data would not be put to other uses.
“This clearly introduces a layer of uncertainty beyond what people expected when they signed up. People do need to double check what they are signing up to. These companies often use broad consent, and I worry whether people know what their data might be used for in the long term," she added.
Dr Stefansson said: “We don’t own the genetic data of our customers, they own the data. We have no access to these data for anything except doing analysis for our customers. We are not selling genetic data, we will not do that.”
He likened the sale to that of a medical diagnostic company or a telecommunications business that holds sensitive data. “There is a change in ownership of a commercial enterprise with a commitment to its customers and keeping data according to certain ethical principles. That doesn’t really change.”
DeCODE Genetics was founded a decade ago as a commercial research business, and has identifed dozens of genetic variations that affect common diseases. Its £600 deCODEme service, which tests DNA for links to disease, was launched two years ago, though customer numbers have not been disclosed. The company has long been in financial trouble, and warned investors in April that it had insufficient funds to see out the year.
It filed a voluntary petition for chapter 11 bankruptcy in a Delaware court yesterday, which allows it to continue operating while its assets are auctioned. Saga was named as a “stalking horse” bidder that has agreed to buy its core operations, though other companies may still top its offer. Subscribers to deCODEme were sent an e-mail yesterday saying that the service would be unaffected by the bankruptcy and sale.
Dr Stefansson said: “This is the best outcome of a bad situation for us. The silver lining is that it allows us to continue. I sit here on a strange, cold rock in the North Atlantic with a strange mix of emotions.”
DeCODE’s bankruptcy comes just days after its main competitor selling personalised DNA tests, 23andMe, raised its prices, prompting suggestions that the fledgling industry is struggling to make consumer genetics pay.
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Edward Farmer wrote:
Dear Sir,
A quick but fundamental clarification to your piece on deCODE genetics' bankruptcy filing: the Iceland-based subsidiary that performs all of deCODE's human genetics work - manages its population resources, conducts its research and services, offers and processes its tests and genome scans,
and whose scientists and laboratories are licensed to undertake this work
- is not in bankruptcy. It continues all its operations without
interruption. This subsidiary (Islensk Erfdagreining, or IE) does so under
the same data and privacy protections as ever, rooted in the Icelandic
community and within a tried and tested regulatory environment.
The long and the short of it is that under the Chapter 11 process, IE,
currently owned by deCODE genetics, will likely be sold to another group of
investors as a going concern. Such a change in ownership of the operating
company will have no bearing on the terms under which the Icelandic
subsidiary manages and analyzes samples and data. Indeed, given the tone of
your story it seems important to emphasize that the Icelandic subsidiary
does not own these samples or data. They are owned by the individuals who
provide them and are only utilized for the specific purpose, whether
research or testing, agreed upon with those individuals and under the
regulatory protections under which we work. Thus these resources cannot be
sold and are not for sale, and IE's genetics operation cannot be put in a
box and taken somewhere else.
Yours sincerely,
Kari Stefansson
CEO, deCODE genetics
November 19, 2009 9:13 PM GMT on community.timesonline.co.uk Recommend? Report Abuse Permalink
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